Observations about my consultation with Dr. John G. Kennedy at HSS

[cshires]

Hi everyone,

Last week I flew from my home in Colorado to see Dr. Kennedy at HSS in NYC. I've done an obsessive amount of research after being diagnosed with a medial side defect, right ankle, uncontained (on the talus shoulder), non-cystic, approx 15mm x 8mm in size.

After educating myself, I decided I only wanted to be treated by one of the (seemingly few) leading surgeons for this type of injury. I made three phone calls: to Dr Eric Giza who is not currently accepting new patients, to Dr. Lew Schon with whom I have an appointment on Dec 15 (a four-month wait), and Dr. Kennedy who was able to see me within one week (and is available to do my surgery in early October). 

So far, my experience at HSS has proved to match the rave reviews you read about online. Dr. Kennedy was thorough, patient, educated and caring. His staff, on the day of my appointment and in subsequent phone calls, have been thorough, responsive, respectful and sympathetic.

Before meeting with Dr. Kennedy I had a hunch that he was not a fan of the Zimmer Denovo NT treatment and this turns out to be true. He mentioned that there are two avenues for treatment of OCD lesions: repair (microfracture) or replace (grafts).

For my defect, he recommended microfracture with BMAC (from my iliac crest) and Biocartilage. He says he has a 90% success rate with this line of treatment and is very confident that this is the current best treatment for repairing OCD defects of my size/condition. He emphasized that his confidence is entirely and only placed in evidence-based treatments that show results-- and to that end, both his research and the evidence point to this being the current best treatment (he mentioned that other leading ankle surgeons are transitioning to this belief as well). For larger, more complex defects he is a big believer in OATS and is considered one of (if not the best) for this surgery.

I have read so much that is negative about microfracture that it's been difficult to wrap my head around proceeding with this treatment. Dr. Kennedy did indicate that methods of how to microfracture have evolved in recent years and that in years past it's possible more damage was done to patients during the surgery but that is not the case now. Also the addition of BMAC to the microfracture procedure seems to be the biggest change in the success of this procedure.

I am moving forward with Dr. Kennedy and expect to have a follow-up phone call with him in the next week or so to ask some questions that have come up since I met him in person.

Would love to know any feedback others have about microfracture + BMAC. I'm happy to answer any questions from others too. Dr. Kennedy was the fourth surgeon I've seen- the first two were inexperienced with this type of injury and the third was a Denovo NT advocate based in Denver.

[Namelike]

If I were in your position I wouldn't rush into surgery. Right now it seems like the opinions from your doctors are 1-1 between DeNovo and Biocartilage. It may be a good idea to see what Dr. Schon thinks of Biocartilage and then decide. From my experience it seems that he favors DeNovo but maybe MF/Biocartilage is better in different situations.

[cshires]

Thanks for the reply. Yes, it's my impression too that Dr. Schon favors Denovo which is one of the reasons I wanted to see him in addition to Dr. Kennedy. I'm a bit discouraged by having to wait so long for the appointment with Dr. Schon - I want to get the surgery behind me so that I can get on with my life but I also am not going to be shortsighted about things either.

I find myself really wishing there was an agreed upon standard of treatment. It's frustrating as a patient to feel as though I have to somehow figure out what's best while surgeons themselves disagree. The Denovo surgeon I saw in Denver touted a 90% success rate as did Dr. Kennedy. On the upside, I guess it's encouraging that either option would most likely be successful...

On another topic, I'm most captivated right now by the use of BMAC. There doesn't seem to be a lot of info available on long-term efficacy but what I have read makes me wonder if this is a new line of treatment that may prove to be a game changer - the new gold standard - in the treatment of OCLs. Does anyone have any insight into this?

[casper1955]

If you can function and do not have constant locking of you ankle you may want to wait and talk with Dr. Schon.  I had MF on March 12, 2015 because of insurance reasons.  A very good ortho who I have deposed many times in the past and have seen the good work he has done on some really bad feet and ankles. 

As of today I am now able to walk at a 17 minute per mile pace 3.5 miles.  I have to take the next day off.  I am also able to ride my bicycle 12 miles at an 16 mph pace.  Again I take the next day off because I feel stiffness and an ache in the ankle.  But my ortho said he thinks the MF repair will only last between 2 and 8 years depending on my activity.  Running marathons shorter, walking on even terrain longer.  I will probably be in the middle somewhere.  I am in my 60s and plan on retiring in a few years.  When I retire I plan on cycling across the U.S., Kayaking the Mississippi from source to sea and walking the tri-fecta of hiking trails, Pacific Crest, Appalachian and Sierra trails)  Each year I plan on accomplishing one of these.  In the past I have run tri-athalons, marathons and was a very active runner at one time running 40 to 70 miles per week.  No more long distance running, but that is the only thin I am giving up because of this. 

Good luck with whatever procedure you go with but regardless the recovery is longer than you will believe until you experience it.  When I was told 3 to 6 months I kind of laughed inside and said to myself yeah right I will be up and around in 4 weeks no problem.  I wound up back in the boot after doing to much to soon.  The ankle swelled up like a grapefruit and was like playdough.  After surgery and during recovery the nerves in the foot, ankle and leg were constantly firing on their own.   The PT would comment on it. 

Also please check back in here to update your progress so others can learn from your experience. 

[BLT]

What was it about Denovo that Dr. Kennedy didn't like? What was it about the data he saw?

[jnj15]

I had BMAC + Biocartilage in March (also at HSS) surgery to repair two 15X15mm lesions on my right talus and tibia. I am doing great now and cannot recommend the guys at HSS and the procedure highly enough. I am not running yet but I am more or less unrestricted in my daily activities. The ankle swells up a bit at the end of a long day on my feet, and there has been some aching lately from unpacking after a recent move. Please see the thread I started for more details.

I also consulted many physicians between DC and NYC, and noticed that several (including the surgeon I ultimately went with) had had experience with Denovo but were also experimenting with other technologies--this made me believe Denovo is not a magic bullet. There are many success stories with Denovo, but my understanding is it can fail if the tissue, which I believe is live donor issue, does not incorporate fully with your own. There also may have been a problem using Denovo to treat kissing lesions, which I had.

I also believe Dr. Schon has financial ties to Zimmer, which markets Denovo, so keep that in mind for what it's worth. Good luck! Happy to continue the dialogue, here or by PM.

[BLT]

I had BMAC + Biocartilage in March (also at HSS) surgery to repair two 15X15mm lesions on my right talus and tibia. I am doing great now and cannot recommend the guys at HSS and the procedure highly enough. I am not running yet but I am more or less unrestricted in my daily activities. The ankle swells up a bit at the end of a long day on my feet, and there has been some aching lately from unpacking after a recent move. Please see the thread I started for more details.

I also consulted many physicians between DC and NYC, and noticed that several (including the surgeon I ultimately went with) had had experience with Denovo but were also experimenting with other technologies--this made me believe Denovo is not a magic bullet. There are many success stories with Denovo, but my understanding is it can fail if the tissue, which I believe is live donor issue, does not incorporate fully with your own. There also may have been a problem using Denovo to treat kissing lesions, which I had.

I also believe Dr. Schon has financial ties to Zimmer, which markets Denovo, so keep that in mind for what it's worth. Good luck! Happy to continue the dialogue, here or by PM.

I get what you mean about the Denovo. It does ultimately depend on whether the cells multiply after it is inserted. And there is no scientific way to know beforehand that it'll grow for the specific patient. I think most of the odds are that it will grow - but it takes at least six months to a year post op to know.

[cshires]

BLT- I was really wanting Denovo over any sort of microfracture so I kept pushing on why he didn't like Denovo. He just kept reiterating that he goes where the evidence is, and that Denovo isn't measuring up to initial expectations. Now, he did say that it has a 75-80% success rate so I think there's good reason to believe and expect that you and many others are part of that success majority. However, for his patients he said he goes where proven evidence of 90% success rates are: microfracture+BMAC for repair, and OATS for graft replacement.

[mhop]

That's interesting about the success rates.  I wonder if the discrepancy has to do with who is getting which type of surgery.  For one thing, those with bigger defects might be referred to DeNovo vs Microfracture.  Also, my general observation is that a lot of active folks (runners, etc) are demanding Denovo vs microfracture.  How is success defined?  If a person is relatively sedentary/not a hard core athlete, he/she may get microfracture, and that might be sufficient if he/she does not push to do demanding activities like running or basketball.  On the other hand, a marathon runner might get denovo and have a lower success rate because he/she will want to resume an activity that is a lot of pounding on the joint.   When I had my surgery, I did not have microfracture + BMAC as an option.  I'm sure that is superior to ordinary microfracture, but I'm still curious to see how that will stand up against denovo long-term.  When I did read some of the studies claiming that standard microfracture was 80-90% effective, I questioned this.  And, I had a lot of orthos try to tell me I needed standard microfracture, citing its 80-90% effectiveness.  However, when I looked at the research, it seemed like the studies were dealing with relatively small lesions, more sedentary individuals, and two year follow-up times.  So, you can design any study to make your procedure look good, and then cite 80-90% effectiveness.  I wasn't buying it, though.  I went with what seemed like the most logical fix at the time I had surgery.  If micro + BMAC been an option for me, I would have considered it, but microfracture alone just didn't seem to make sense physiologically.  It will be interesting to see the longer term research on denovo vs micro + BMAC.  I can say that, for now, I am happy with my denovo graft (but also it took me a LONG recovery time to feel like I was making any progress; if you had asked me 1 year post-denovo if it had worked, I would have called it a waste of time and money; almost 2 years later, it's a different picture). I guess the real test will be to see how things hold up over time.  Please keep us posted on what you decide and how things go.

[cshires]

mhop:

I'm really so glad to hear how well Denovo is working for you over the long-term. Wouldn't it be wonderful if more than one procedure turns out to be very effective for treating these injuries? Perhaps Denovo and Microfracture with BMAC/Biocartilage will both prove viable over time.

In response to activity level, during my appointment with Dr. Kennedy I told him I was willing to give up running but that I would be really sad to have to give up hiking. He told me very directly that when he says "90% success rate" he's not talking about a success that includes puttering around the house and gardening. He said the 90% is a success rate for getting me back to my previous, uninhibited active life.

And oh how I'm wanting to believe that.

[mhop]

Cshires - that sounds great.  I'm glad your doctor is able to be specific about that because we all define "success" differently.  Keep us posted on the route you decide.  I agree that there may be more than one successful approach to treatment.  In any case, I think the more successful surgeries will be those that 1) are able to hold up over time, withstanding all of the stresses on the joint and 2) "fill the hole" with something biologically similar to the hyaline cartilage that was originally there.   I also predict that in the future stem cell procedures will be improved upon and will be a big part of cartilage repair.  I would LOVE to be a part of that research; pretty cool stuff.

[ocdnetadmin]

This is great info guys. Thanks for posting..

I have to admit I've been out of the loop for a while. After all.. learning about this stuff takes up considerable real estate in your brain and I didn't want to expend the energy for it.

My ankle has been deteriorating though recently so I have to get back into research.

One question.. what does BMAC stand for?

[cshires]

Alan, sorry to hear your ankle is acting up again. I'm still learning all I can about BMAC - Bone Marrow Aspirate Concentrate. If you Google it you'll come up with a variety of articles, most all of which sound promising and optimistic in initial research.

You can read about the current clinical trial underway here: https://clinicaltrials.gov/ct2/show/NCT02011295

Also, this is an interesting read here that references 4-year results following MF + BMAC: http://www.medscape.com/viewarticle/810158_2

[Kerri]

Hi All,

I'm going to try to get an appointment with Kennedy at HSS.  Has anyone had any experience with Drakos or O'Malley at HSS?

Thanks!

Kerri

[RN1]

Hi All,

I'm going to try to get an appointment with Kennedy at HSS.  Has anyone had any experience with Drakos or O'Malley at HSS?

Thanks!

Kerri

Hi Kerri,

I just had my ankle repaired a couple of weeks ago by Dr. Drakos at HSS. My procedure included BMAC and Biocartilage. So far I am doing great. I will be 6 weeks non-weight bearing and I have had very little pain. I really like Drakos and his staff and can't say enough about HSS. Let me know if you have any specific questions.